As Cat and Julian had come with a particular interest, and plan, to get the EEG program up and running here at FAME, they had also wanted to give some lectures to the staff that would help with their understanding of not only treating epilepsy, but also when to consider ordering an EEG. A year or so ago, through a number of connections that aren’t necessary to go into at the moment, we began working with a company, Brain Capture, that had designed a very portable and unique EEG device for particular use in low resource settings where there were no neurologists. The original intent was for this technology to be implemented in hospital settings where virtually anyone could be trained to apply the EEG electrodes via a proprietary cap, the EEG data could them be obtained via the Brain Capture device (a jack box/amplifier) which would couple with an iPhone to assure the study was being run correctly and then uploaded to the cloud via the internet. At that point, the study would be read by a Brain Capture neurologist and the report transmitted back to whoever had done the study.
Obviously, not having neurologists present is not a problem for us (we often have more neurologists at FAME than there are otherwise in the country), and when we’re not here, we’re in constant communication with the staff at FAME to provide guidance regarding which patients should have an EEG and what to do with the data, but the ability to have a portable EEG that uploads the data to the cloud which we can then access would be key to our mission here at FAME. As I have pointed out in the past, epilepsy is now the most common diagnosis that we’re seeing at FAME in the neuro clinic, and it also represents a very vulnerable population of neurology patients who have an entirely treatable condition as long as they are appropriately evaluated and placed on the correct medications that they can hopefully continue. There are clearly many variables in that last sentence – we can handle the appropriate evaluation and correct medications part, but whether patients can continue on the medication is a matter of affordability and/or support, hence how important it is for us to continue working on funding opportunities for our neurology program.
Today, Cat and Julian were able to complete their first Brain Capture EEG for this trip with the assistance of Elibariki (who has been doing them for a year) and Jacob (who is now being trained and will be the point person for these studies going forward). It’s important to note that epilepsy is a clinical diagnosis and does not require patients to have an EEG for that diagnosis, so there is always a concern about overutilizing the technology which would be a problem given our already over stretched staffing here at FAME and concern for conservation of resources including personal. This is something (i.e. when to do an EEG) that Cat and Julian will be working on during their time here. This morning’s educational lecture was being given by Cat and was to cover anti-seizure medications with an emphasis on pregnancy as many of the medications’ metabolism is affected by changes that occur during pregnancy and many of the medications are problematic regarding birth defects and need to be changed, though it depends on which trimester you’re dealing with. Cat presented what could have a very dense lecture with lots of flow charts and algorithms that could have easily lost the bulk of her audience, but everyone was totally engaged in her presentation and, based on the numerous excellent questions at the end of the lecture, all had clearly understood the material.
One of our early patients in the morning was a 7-month-old child who was not developmentally normal, and mom gave us a very accurate description of a seizure type know as infantile spasms which the child had been doing for several months. This diagnosis, which is most often particularly devastating as the prognosis for normal development is terrible, though there are a few patients in which the condition can actually resolve. There is a particular EEG pattern, known as hypsarrhythmia which is highly chaotic and high in amplitude, that is particularly diagnostic of this condition, also known as West’s syndrome, but unfortunately, the smallest cap for our Brain Capture device would not fit this child. These patients are treated with high dose prednisone for a month to see if their seizures resolve, and so we started this child on the steroid and asked them to come back to see us in a month when Leah, or child neurology resident, would be here.
The number of patients for the morning was pretty steady and there seemed to be a bit of a lull after lunch, that is until we had two doozies at the end of the day. The first was a 33-year-old gentleman with no past medical history who came to clinic in a wheelchair with lower extremity weakness and numbness. He told us that he had been diagnosed with typhoid and brucella and treated with a number of antibiotics several weeks prior to the onset of his symptoms, though it was unclear how these diagnoses were made and how accurate they were. The first though was that he could have Guillain-Barre syndrome, or acute inflammatory demyelinating neuropathy, a condition that causes an ascending weakness and numbness that can also lead to respiratory failure, though is reversible, even without focused treatment, but requires supportive care (i.e. ventilator if they stop breathing). It is a parainfectious condition that is often preceded by another infection that triggers our immune system to develop antibodies against the attacker, and in most cases, the antibodies also attack the covering of the nerves, or myelin, that keeps electrical impulses traveling efficiently, and our peripheral nervous system functioning.
Our patient, though, described symptoms up to his waist, but nothing in his upper extremities, which was not consistent with Guillain-Barre, and his examination confirmed normal strength in the arms with severe weakness in both legs, though more proximally than distally, not the pattern seen in Guillain-Barre syndrome, or GBS. Additionally, he was having significant urinary retention and constipation, and the reflexes in his upper extremities were normal. An additional piece of important history, though, was that he had been complaining of back pain prior to the onset of his symptoms. This immediately raised our concern a perhaps more concerning condition that would require urgent intervention – cauda equina syndrome. This condition involves compression of the nerves running from the end of the spinal cord and exiting the lumbar canal (known as the cauda equina, or “horse’s tail”) which causes weakness and numbness of the lower extremities (sparing the upper extremities) along with bowel and bladder dysfunction (urinary retention).
This condition requires emergent intervention with surgical decompression for the longer the compression continues, the more likely the deficits will be irreversible, and especially the bladder dysfunction. This would require imaging with an MRI scan and a neurosurgery to intervene, neither of which we have here at FAME. I contacted the neurosurgeon at Kilimanjaro Christian Medical Center (KCMC) in Moshi, about 3 ½ hours away, and she agreed to have the patient sent over to her for evaluation and possible treatment. I had Dr. Annie speak with the patient and brother to make them aware of the situation, and she initially indicated that they would plan to go to KCMC in several days, which was completely unsatisfactory. I don’t recall my initial response, though I am certain that it translated to “no, now.”
We had planned to visit Daniel Tewa this evening, so when a patient came back to our waiting area, having been sent by reception at approximately 4:15 pm, I wasn’t a very happy camper. Apparently, the patient and her mother had been waiting out front for the regular OPD, which was very crowded, when they should have been triaged to us. Joe began to see the patient while I headed home with Patrick so he could meet with one of my previous residents by Zoom for a primer on entering data into our database, while Cat stayed behind to staff as it was an epilepsy case. As they say, though, the plot thickened as soon as they began seeing the patient.
She was an otherwise healthy 5-year-old girl with a history of two episodes of convulsive status epilepticus lasting 30 minutes each time for which she had been taken to the hospital each time, still seizing, and had required aggressive treatment to stop her seizures. The child’s examination was normal, and she was also developmentally normal, so she required no other evaluation at the time. There was little question of her diagnosis or that she required an anti-seizure medication, but when this was suggested, the mother made it very clear that she was not interested in the child taking medications and that she felt the child could be cured with prayer. This was a very difficult situation and Joe began what anyone would have done in that situation which was to begin educating the mother as to our concern for additional seizures, along with the distinct possibility that her daughter could suffer harm or die as a result of continued seizures given the fact that she had already had two episodes of status. Mom was not budging regardless of how hard they were leaning on her, and it was now past our time to depart for Daniel Tewa’s house.
I loaded up the Land Rover with most of our group (Jack was hanging out with Joe for support) and our next-door neighbors, Anil, Izabela, and their two children, Nayan and Avni, and we headed over to the clinic to pick up the other two. We waited while Joe continued to work on the mother, and though she seemed to be close to agreeing to start medications, in the end, she did not take a prescription but did agree to come back for follow up (whether she follows through with any of that remains to be seen). We did eventually pry Joe away from the situation, though not without much angst on his part. Overall, it was an excellent example of some of the difficulties we encounter here as a result of the cultural nuances that exist, and that navigating these may not always be as straight forward as one might think. On the other hand, this same situation could have just as easily occurred at home, though if it had, I think there would have been more support and resources available to us to have handled the situation differently. Decision making here is often very communal and multiple family members, village elders, and others may need to be consulted before a resolution can be found.
We were eventually on our way to Daniel Tewa’s home for a visit with my old friend of 15 years, who I have visited with and brought my residents to each and every time I’ve come to Tanzania. I have written so much on Daniel over the years but save it to say he is one of the most remarkable individuals that I have ever met. We first worked together in 2009 when I had brought my two children, and we were volunteering at the Ayalabee primary school nearby Daniel’s home, and he joined us as one of the Ayalabee Village elders. We quickly became close friends and have remained so ever since. Every group of residents and others who I have brought to FAME have gone to visit with Daniel and his family – we had initially gone for dinner until the pandemic came and made it more impractical, and now we visit to have coffee and cake and talk as well as see the traditional underground Iraqw house that he build in the early 1990s as his children had always accused him of making up stories when he told them he grew up in a similar house underground. The purpose of the house was to protect themselves and their livestock, who were corralled overnight inside, from the Maasai who believed that all cattle were God’s gift to the Maasai and that they were only taking back what was rightfully theirs. Leave it to say that Daniel’s stories of early Tanzania before independence, and of the rest of the world, are priceless and his grasp of world geography and politics is equally impressive. I have been honored to know him and to have been considered a part of his family for all these years.
